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Topic: How many ADH/ALH who had lumpectomy but still got cancer later?

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Oct 25, 2019 02:17AM

Utahmom wrote:

Just curious to know how many of us diagnosed with ADH or ALH had the lumpectomy and/or additional meds to keep cancer away but got cancer even after the removal?

DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH
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Nov 8, 2019 04:55AM Utahmom wrote:

That's a lot of screening. I am already struggling with the every 6 months let's do another mammo. My 1st cousin did multiple screenings for years and numerous biopsies that read, benign hyperplasia, or something different but benign. She had at least 3 or 4 and then finally boom...Invasive Ductal Carcinoma Stage 2. She is doing well.

My other 1st cousin had invasive ductal carcinoma. Lump just showed up. Mammo fine before lump. She went in and there it was. Stage 1 and in some lymph nodes. She lost half her breast and did all the treatment. She is a 10 year warrior! She did say that she was concerned about me because she thinks there is a progression happening in my breasts. First, the microcalcifications that keep coming, then, the right breast hyerplasia, the the left breast with atypical hyperplasia associated with calcifications. She knows that I don't want to do the chemo pills.

But at what point and this is different for everyone to say, "I really don't want to do this anymore?".

As you all know, I am not going to do the chemo pills. My father-in-law just retired about 4 or 5 years ago. He was a surgeon. He said, " you save the big guns for the big battle." He did not think it was a good idea.

Really trying to weigh it all out.

thank you each for sharing your journeys and being honest.

DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH
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Nov 9, 2019 02:47AM MaryScout wrote:

Hi All,

I had ADH and ADL, and decided right from the get-go to do a PBMX with diep flap (at NOLA). It's such a personal decision, and wherever anyone goes is a place that we support and appreciate. So I know that my decision is one that a lot of people wouldn't do, but for me, it was a great decision. I just didn't want the drugs, the monitoring, the many biopsies in my future, the anxiety, etc. My foobs are amazing, my recovery was smooth -- in short, I am so glad I took this route. But again, I know it's not for everyone. Feel free to DM me if you ever want to talk.

Warmly,

Mary

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Nov 9, 2019 09:57AM Utahmom wrote:

You all are so brave, each in her own way and each with her own personal story to write and tell.

Thank you brave ladies. I am really soaking in all the life lessons that you are teaching.

God bless each of you!

DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH
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Dec 19, 2019 06:03AM Concerned2012 wrote:

To all you brave ladies, my prayers go out to each and every one of you for weathering this unfriendly storm. I haven't been on here in quite some time, but 7 years after ALH, here I am. I have now been diagnosed with at least ADH. I had a biopsy on Monday revealing ADH and I need another biopsy on 2 remaining sites in the same breast where the ADH was just diagnosed. I have a call into my breast surgeon requesting whether she suggests having another biopsy or just do a lumpectomy. I am also highly considering a PBMX instead. I have been doing the "wait and see" game for 10 years now, too long and tired. MaryScout, I commend you for being so brave and choosing the PBMX, which my surgeon talked me out of in 2012. I am glad then, but now I am highly considering it. Thank you everyone for listening, just needed a familiar place to confide in others with the same story/journey. May you all be blessed with continued health. Regards, Valerie

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Dec 20, 2019 11:53AM - edited Dec 20, 2019 11:54AM by Lea7777

Valerie, do remember 80% of biopsies are not cancerous, so odds are still with you. As for the PBMX, I'll share what the last oncologist I visited said, which was no PBMX was needed for the diagnosis of LCIS, ADH, ALH based on biopsies over the past 2 years. But he said if you have atypia again in the future, then PBMX could be a good idea. That's kind of what you are looking at. Best wishes to you.

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Dec 22, 2019 04:38PM - edited Dec 23, 2019 12:44AM by Utahmom

valerie,

Much love and courage for whatever decision you choose for yourself. Since my original post, I have seen the surgeon and the reconstructive surgeon. I have had my breast mri. That screening went well and showed nothing else concerning.

I have ADH associated with calcifications in one breast and Benign Hyperplasia in the other, new mictocalcs in both and changes noted throughout, Birads 4 density, fibrocystic breasts and family history. My surgeon has a differing opinion than Lea's. He told me that it will come back. He said they have data now to prove that it will. He said the studies are 10, 15 year data. He said the real danger is that ADH does not just affect one breast but both. Of course, I already know this as evidenced by my busy breasts. I told him that I did not want to do the 5 year protocol of tamoxifen and he said that I would need to carefully consider my next steps. He also shocked me and told me that based upon my breasts, my age, my family history that he would support me if I made a decision to have s PBMX. My husband is a scientist and his father is a retired surgeon. When my doctor left the room, my husband who was totally against a PBMX, said I have heard all that I need to hear. I know what I think you should do, but it is your body.

The doctor said the 3 top factors that affect breast cancer risk. #1 heredity, family history, #2 American diet and junk we eat, #3 weight. He said being overweight even just a little bit increases the risks.

I have delayed my removal of the ADH. I need to be thoughtful in my decisions.

Still weighing it out.



DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH
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Dec 23, 2019 01:26PM - edited Dec 23, 2019 01:36PM by Concerned2012

Lea7777, Thank you for your response. This is my 2nd atypia In 7 years. These multi focal areas were not on my last year's mammo nor MRI. I will wait for the results of my 2nd biopsy which is tomorrow. I will then see my breast surgeon and I alsohave a consult with a breast oncologist at a big cancer hospital in NYC.

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Dec 23, 2019 01:35PM Concerned2012 wrote:

Utahmom, thank you for your response. I’m sorry you are dealing with this “junk” and needing to weigh your options on the course of treatment you need to take to conquer this “beast.” My prayers are with you and may you continue to have all the strength & courage to guide you with your decision.

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Dec 23, 2019 03:35PM Lea7777 wrote:

One more distinction to take into account between what my oncologist said about PBMX IF atypia is seen again and UtahMom's surgeon's opinion that ADH WILL appear again--I am on a SERM and UtahMom is not, along with other differences.

The longterm data for ADH or ALH is concerning, I agree. Two charts, below, from a Mayo and Vanderbilt study show the risks. The blue 1, red 2, and green 3+ are the number of foci, meaning how much ALH or ADH is present. Number of foci is often not part of the pathology, but I have asked for it specifically. The full study from which the charts were taken is here: https://www.ncbi.nlm.nih.gov/pubmed/27352219

I wonder if a #4 factor is general pollution and contamination in our surroundings regardless of what we are eating or our weight.

Best wishes to you UtahMom and Concerned2012. At least decisions do not need to be made quickly.


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Dec 24, 2019 01:35PM Concerned2012 wrote:

Lea7777, Thank you for this information, very informative.

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Dec 24, 2019 02:06PM redhead403 wrote:

I had a biopsy in april of 2019 that was FEA, ADH, I think ALH and had an excisional biopsy or a lumpectomy. Had a mammogram in July with an US. MRI in August. Finally had another biopsy in September that showed Invasive ductal CA.

Surgery 4/16/2019 Lumpectomy: Left Dx 9/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 11/7/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 1/7/2020 Whole-breast: Breast
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Dec 25, 2019 06:27AM Concerned2012 wrote:

Redhead403, I am so very sorry to hear that your ADH and other atypias wound up being IDC. Can I ask you if the IDC was in the same breast as the ADH? and if so, do you think that IDC was missed upon the lumpectomy? Also, what prompted another biopsy in September? My 2 other areas that were biopsied yesterday didn't show any further atypia. I am still concerned that the ADH is in the forefront and that DCIS is lurking in that background. I will wait to hear what my current breast surgeon has to say, which I am sure just to do a surgical biopsy (lumpectomy), and what the breast oncologist at my 2nd opinion recommends. I truly hate the waiting game. My prayers to you and everyone here.

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Dec 25, 2019 07:10AM redhead403 wrote:

Actually my original mammogram in Oct of 2018 that picked up microcalcifications in both breasts. They wanted to set up a biopsy at that time, but my insurance was poor so I opted to wait until April of 2019 for an excisional biopsy left breast. It was just Fea and ADH. It was coming up on a year and BS decided that I needed another mammogram. So I had mammo, US and Mri in july and august. The Mammogram showed again microcalcifications and suspicious one in the left breast at 12 o'clock. In September, they did a stereotactic biopsy with mammogram guidance. The results came back IDC. I don't know your age, but the trend is now to start tamoxofin or aromatase inhibitors. Seems to slow down progression. I hope and pray that this is the end of it for you.

Surgery 4/16/2019 Lumpectomy: Left Dx 9/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 11/7/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 1/7/2020 Whole-breast: Breast
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Jan 9, 2020 03:59PM Utahmom wrote:

The one thing that I have not shared, because it is gut wrenching, is that my surgeon was adamant with me that it will return and then he said the following: you already had Benign hyperplasia in the right breast. Now, 6 years later you have ADH associated with microcalcifications in the left breast and all sorts of new microcalcifications in both breasts. Your next stop is DCIS, if you are lucky. If not, Invasive BC. Also remember, once it becomes cancer, 1 out of 3 will metastasize.

I have not put that out there because it hurt to much to share it. Those were his words to me.


DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH
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Jan 9, 2020 04:01PM Utahmom wrote:

lea777,

Those articles caught my attention during my research. That number of foci is very important.


DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH
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Jan 28, 2020 12:48PM Concerned2012 wrote:

Utahmom, I am sorry to hear that your surgeon is adamant about the progression of ADH to DCIS, if not IBC. I am scheduled for a lumpectomy next Thursday, but contemplating even more now a PBMX. I met with my GP and w/o asking her for her opinion she offered it to me. She was adamant that I remove my breasts. I met with my GYN today and asked him for his opinion and he said “If you were my wife, I would tell her to remove them." Both doctors agreed that it was just a matter of time that I would either have DCIS, at best or IBC, just like yours.I'm going to consult with my BS and discuss her thoughts on PBMX, which she was onboard with 7 years ago when I had ALH. Can I ask you what you have decided? Continued prayers for you.

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Jan 30, 2020 02:27AM - edited Jan 30, 2020 04:40AM by Utahmom

My friend here in Utah is two weeks out from a mastectomy. She is about my age, 52. She had no issues up until her Mammogram this past summer. It showed something. They sent her for MRI and US. The area of concern after lumpectomy was ADH. She does not have dense breasts, however. They encouraged her to have counseling about ADH because they said it put her in a high risk category. She does not have BRCA. She has two aunts and three 2nd cousins that all had BC. Lots of family history of several different cancer, mostly BC and Colon. After counseling, she made the decision to do the mastectomy and diep flap here in Utah. She has 3 children, one is still very young; 9 years old.

They advised that it will either come back or evolve into something else based on the latest data of 10 and 15 years. She did not want to do the medicine or do all the monitoring every 6 months. So, this was the option that remained. Her doctors said that the drugs reduce her risk in half. She said that she would rather remove them and reduce it even further.

As an FYI, after the mastectomy, the tissue revealed the ADH had already came back since July of 2019 or, that it was more ADH in there that just did not show up yet. I found that very interesting.

Also noted that women with atypical hyperplasia have about four to five times the breast cancer risk of women without proliferative condition.


DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH
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Jan 30, 2020 02:58AM farmerlucy wrote:

I think searching for ADH or ALH in a biopsy is a shot in the dark. Mine was supposedly removed as well in the “partial mastectomy”/ lumpectomy the fall before the PBM. More of both was found in the mastectomy.


Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Jan 30, 2020 04:42AM Utahmom wrote:

You are absolutely right! Yours was hiding around in the other tissue and so was hers.

My BS said that there was the obvious place but also another that is suggestive of the possibility of something else.

DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH
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Jan 30, 2020 07:57AM Utahmom wrote:

I am still weighing it out. I am scared. Let's tell the truth. I wish I was brave but I am not.

I know that I have multiple things going on in both breasts with the PASH, usual hyperplasia and now ADH associated with microcalcs.

I think I know what I should do. My father-in-law is a surgeon. He is retired about 7 or 8 years now. He does not want me to have a PBMX at this time. He wanted me to just have a lumpectomy. Of course, he did not know the extent of my family history of BC because that is not something you talk about over dinner. My family supports me but not him or my mother-in-law, so that is very hard for me emotionally. He was, however, adamant that I should not take the meds as a preventative measure.

DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH
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Jan 30, 2020 02:27PM farmerlucy wrote:

It is your decision and yours alone. Folks thought I was crazy, including my husband and my daughter. Yep. Boy did I feel all alone

My BS drug his feet for months until forced into it by the genetic counselors’ opinion.

After the dx my brother, the oncologist, said to my son, “How the hell did she know?” Yep.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Jan 30, 2020 11:58PM MaryScout wrote:

Hi Utahmom,

I totally understand being scared. At first, when I told my sister I was thinking of PBMX because of my ADH and ADL, she told me I was being paranoid. And it took a lot of time for me to come to the decision and make a date for surgery. Once that was done, it kind of felt like the train had left the station, and I was just along for the ride.

Waking up from surgery I remember thinking, "Did I really just do this?" But by the time I got back home, I couldn't believe how free I felt. It was springtime, and the weather was beautiful, I was healing, and it just felt like I had faced something head on and put it in the rearview mirror.

My experience is just my own, and I really do respect women who make all sorts of different decisions. Everyone is different. Just sharing with you for what it's worth.

I'm thinking of you and sending good vibes in the time of making a decision.

Yours,

mbo

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Jan 31, 2020 01:52AM Utahmom wrote:

What have been limitations for exercising, sports, etc after mastectomy?

What was the hardest part of recovery?

Any information would be so appreciated.

DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH
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Jan 31, 2020 10:23AM farmerlucy wrote:

I’m eight years out and many advances have been made since. A lot of women are get pre-pec implants now vs the sub pec. Recon was very painful for me and I was instructed to do Dino arms for many weeks. I learned so much here pre-surgery. I read the various “surgery month” posts and I joined the thread for my month. I also asked a lot of questions about no recon. Whippetmom was a great help in advising on the implants. I have had no issues; they don’t feel like the originals, but I’ve forgotten how those felt. Best thing about implants is that I never wear a bra. They do get cold in the winter. In the story of my life losing my breasts to possibly give me a longer life was a no brainer. I just feel like “they” had to take “one” for the team.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Jan 31, 2020 11:33AM Utahmom wrote:

I am trying to figure out how you started your journey. Did you have a mammogram, then biopsy, the lumpectomy?

Do you mind sharing the progression with us?


DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH
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Jan 31, 2020 01:52PM farmerlucy wrote:

I did high risk screening from age 33. In my clinic they did everything in one day (thermogram, mammogram, ultrasound) at the end of the day each person went over everything with the radiologist. If you needed more views or rescreening you get them that day. Then I would come back in six months or a year. At 49 I started have spontaneous unilateral nipple bleeding. The radiologist ordered a galactogram, MRI, and an excisional biopsy. Nothing sinister was found, but the biopsy was completely unguided, so I didn’t put a lot of faith in it.

The bleeding continued two more years, I ditched the first group, had a disastrous second opinion (you’ve done all you can, I'd just ignore it), and then I called the MRI place and said I wanted another opinion. That radiologist did a mammogram and galactogram on the spot, saw the papillomas in the duct and arranged for another excisional biopsy. This biopsy was called ALH/ADH by one local pathologist and DCIS/LCIS by another the path was sent out to Vanderbilt for a tie breaker. Vanderbilt called it ALH/ADH. The BS sent me to a genetic counselor and after going over everything gave me a 50% lifetime risk and felt like the PBM was a reasonable option. My breast were extremely dense, the radiologist said I had the breasts of a teenager (not a compliment). In the meantime the BS had also sent me for an MRI. I had a call back on that MRI and a different radiologist looked at the area by ultrasound and passed on it. It was three years post mx that I requested the report for the MRI, and surprise, surprise the spot that MRI had seen was in the same area and the same size as the IDC they found.

Basically I was sick of the worry and the expense. Each year I had a biopsy, mri, whatever, I spent easily $6-7 k out of pocket.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Feb 1, 2020 12:21AM Utahmom wrote:

Oh my goodness! What a story. I cannot imagine the constant worry from all that you were going through.

Are you all good now or do you still have to be monitored since they originally missed the real culprit?

Thank you for sharing your personal details with us.

DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH
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Feb 1, 2020 12:30AM farmerlucy wrote:

My oncologist and I decided I could stop MRIs since the implants are prepec and theoretically I should be able to feel a recurrence. Now my PCP follows me, so that is very easy. One never knows if/when the other shoe will drop, but life is like that. Carpe Diem.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Feb 1, 2020 01:43AM MaryScout wrote:

For me, it was a routine mammogram that showed the calcifications, and subsequent biopsy showed the ADH/ADL. They set up a meeting with a local surgeon, but it was a month out (a little more). During that time I did a ton of research, knowing that my surgeon would likely suggest the route of excision, 6-month monitoring, and tamoxifen (which she ultimately did). I knew that I didn't want that, so arranged to have surgery in NOLA, even before I consulted with my local surgeon (I knew I could cancel if she gave me any ground-breaking news, which she didn't). I told my local surgeon that I wanted to do a DIEP flap (which the surgeons in NOLA also approved me for), and she told me that I wasn't a candidate and that I would need implants. I walked out of her office and will never go back to her.

I loved the doctors and the stay in NOLA. Honestly, it was almost like a spa. There was some pain and discomfort after surgery, but not much. Traveling wasn't too much of an issue either (though you need a companion to help with heavy luggage). By about 2 weeks out I was really feeling pretty good. Three weeks I was feeling much, much better, doing light housework, etc. By four weeks, I went on a trip to Ireland! The doctor gave me the go-ahead, but initially he didn't think it was a good idea. By 8 weeks I did a scuba trip! So I have to tell you, my journey was really great, and I know that others take more time to heal. I was good about exercising before surgery, and was diligent about walking, etc., afterward. I think that helped a ton. I'm now done after phase 2, and I feel great. Honestly, my body looks so much better than before! Perky warm boobs, flat stomach, etc.

Sure hope this helps! Happy to talk anytime.

Mary

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Feb 1, 2020 10:55AM Utahmom wrote:

Wow! So, when did you start walking after the surgery? What week did you begin?

When did you start doing any arm weights or what other exercises did you start and when?

DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH

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